Reflect, Relate, Advocate: The UpTic's 2024 Season Highlights

Welcome back to The UpTic! As 2024 comes to a close, I’m reflecting on the incredible conversations we’ve had this year and the powerful insights shared by our guests. In this special highlights episode, we revisit some of the standout moments from the season, featuring discussions on occupational therapy, neurodiversity advocacy, groundbreaking research, and more.

Dive into inspiring stories, actionable advice, and cutting-edge research that not only demystify TS but also shine a light on the strength and resilience of the TS community. Press play and hear from parents, researchers, advocates, and professionals who’ve shared their experiences and wisdom with us throughout the year.

Episode Highlights:
[0:00] – Opening Reflections: Reflecting on the mission of the podcast and the unique diversity of Tourette Syndrome cases.
[3:20] – Empowering Through Occupational Therapy: Practical life tools for TS management with Shannon Floyd and Jan Rowe.
[4:59] – Empathy in Action: Nurse Jillian Firenze shares how laughter and support from her parents shaped her journey.
[6:29] – Parenting with Positivity: Insights from Rena and Maggie LaSalle on minimizing stress and building a support system for children with TS.
[9:37] – Advocating Unapologetically: Harvard freshman Slayton Cooper discusses the importance of owning your needs and advocating for them confidently.
[12:00] – Breaking the Feedback Loop: Dr. Angie Landeros-Weisenberger explains the brain's sensory gating system and the science of habit reversal.
[14:23] – Shaping the Home Environment: Drs. Jeremy and Jeff Lichtman, father and son psychologists who discuss what worked in their home environment.
[19:30] – Do You Tick in Your Sleep?: Occupational therapist Ben Mooney explores the connection between sleep and overall well-being in TS management.
[23:57] – Understanding TS Through Habits: Drs. Jay and Max Tischfield discuss the role of habit formation in TS and their cutting-edge research with Tourette mice.
[31:15] – Holistic Approaches to Care: Drs. Lori Rockmore and Dr. Daniela Colognori emphasize the power of attitude and family support in shaping a child’s long-term outlook.
[34:04] – Managing Public Perception: Dr. Robert Zambrano on navigating social situations and building resilience in individuals with TS.

Links & Resources:
Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

Transcript

Michael Leopold: 0:00

Highlighting the complexity and breadth of Ts has been a major goal of this podcast. I also wanted to be a resource to parents of those newly diagnosed and to inspire action and change in our community. Welcome to the uptick brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research, by sharing the stories and experiences relevant to the TS community. You welcome back to the uptick, and Happy New Year. I'm recording this episode in december 2024 and another year has come to an end. I've been reflecting on the podcast and the goals I set out for the podcast when we began, really I wanted to demystify Ts and CO occurring conditions, especially in adulthood and early adulthood, there's that saying that if you've met one person with Ts, you've met one person with Ts, it's such a diverse condition, and every individual with Tourette is a unique case. So to really understand Ts, you have to learn about a lot of different people and how Ts and CO occurring conditions and their environment all show up in their life. Highlighting the complexity and breadth of Ts has been a major goal of this podcast. I also wanted to be a resource to parents of those newly diagnosed, and finally, to inspire action and change in our community. So as we ring in the end of this year and get ready for 2025 this episode is devoted to sharing some highlights from our season. I've pulled moments from 10 of our episodes of 2024 now these are in no particular order, the first clips you'll hear are from the episode connecting the dots between occupational therapy and Tourette syndrome with occupational therapists Shannon Floyd and Jan row. Occupational Therapists are an incredible resource for children and adults with Ts and CO occurring conditions, and they're a really underutilized resource. You've probably got your physician already. If you have medication as part of your treatment management, you may have a therapist for cbet. What's neat about OTS occupational therapists is many can also do cbet, but they can also guide you through very practical life activities, day to day, activities like going to the grocery store when you have anxiety. Many can even be on call in the moment when you need them. So take a listen to some highlights from that episode.

Jan: 2:54

We have kids that when they come in to see us, they're so down on themselves about their tics, they feel like they're the only person in the world that has tics. They don't know anybody else that has tics. They're oftentimes making decisions out of activities. I don't want to play baseball anymore. I don't want to go to this place anymore. And then they learn some of these tools from CBIT. I imagine

Michael Leopold: 3:14

that does wonders for self esteem and socializing and just, yeah, the self empowerment

Dr. Zambrano: 3:19

there.

Unknown: 3:20

I think our biggest thing is we just want to teach people to live life despite their symptom. We don't want to live life in spite of those things, because that's what's going to make us go more into anxiety and depression. All that we really hope to empower people, give them that independence, decrease the anxiety about their symptoms, educate them and just really give them the tools to live a successful, happy life. Well said.

Michael Leopold: 3:46

Next up, I want to share a clip from our most listened to episode of 2024 this episode was with Jillian frenzy, a nurse with Ts. She's been a nurse and a coach at the Tim Howard Leadership Academy. And the episode is titled empathy in action, navigating nursing with Tourette's Jillian's story. In this clip, she shares a little about the role her parents had in her journey. Take a listen. How would you describe your parents approach to you as when you were diagnosed? Amazing.

Jillian Firenze: 4:20

That's awesome. The most supportive people ever. They still are. They were always the first to, like, first day school, even before to be like, at my teacher's door to tell them, This is my daughter. This is who she is. This is what's going to happen. We use comedy in our household to get through it, because if you don't laugh, you're gonna cry. So was made into a joke. Lots of laughing was used, and there's still lots of laughing that has to be used on like, days that are like bad tip days, they were and they still are, probably my greatest supporter

Michael Leopold: 4:59

this year. I. Have the privilege of speaking with some parents of kids recently diagnosed with Ts. I was inspired hearing their reflections and insights. This next clip is from my conversation with Rena and Maggie LaSalle, whose son Liam was diagnosed with TS recently. The episode is titled, navigating parenting a child with Tourette Syndrome.

Rena: 5:22

It's a roller coaster some days, but you just gotta try to stay positive and pull those little tricks out. It's true. I think that when it comes to living a healthy life, minimizing stress is important and and on a day where the picture bad, doing the things that are making them worse is not helpful to anybody in the situation, remembering that none of the tasks that we need to do are more important than than that stressful experience. You know, the laundry can wait. The supper can wait, the homework can wait, the bath can wait, the conversation can wait. The cleaning can wait. Everything can wait till, until this situation can diffuse, and once we were able to collectively do that as a family and know that, hey, we're all here, however long this last, you know, and let's just, let's just try to keep this as chill as we can, and we do it together, putting our health and mental health and wellness and that that diminished stress scenario as a top priority, it creates the environment for us to work on all of the tools and skills and improve our emotional intelligence throughout all of this. What

Michael Leopold: 6:29

advice do you have for parents who just found out their kid has TS say they just got the diagnosis. They're feeling a little nervous about it. Not sure what it means. What would you say to them?

Maggie: 6:40

I would say the fear comes from the unknown, and when first get the diagnosis, there's something you think it means in your mind, and you know that what's in your mind is not right, because that's not what you're seeing in front of you. That unknown feels very scary, and for a lot of people, when researching medical things that is equally as scary, or, if not more scary. And what I find with with TS is there's so much information and it's a lot to digest. Take that at your own pace. Learning it faster doesn't mean that it gets easier faster, because you could read every piece of information tonight, and you're only going to retain 1% tomorrow. But if you do 1% for 100 days, you'll retain a lot more. So just take it bit by bit. Approach it as learning a different approach to mental health or cooking a different type of cuisine. It's all skills and tools we already know and use. We're just using them a little bit different, little bit different mixture, a little bit sooner? Yeah, I would agree, you know, the more you educate yourself and take it at your own pace, because it is quite a lot. And we've been doing this since he was diagnosed with his thick disorder, you know, yeah, you know, my first thought was, there's no way he's got, PS, no way like he's going to avoid this, right? And the other half of me was like, Well, what have you done? My advice to a parent would be, don't be afraid to start wherever you need to start. You may be in the wrong spot, or it may not be something that 100% pertain to you or your child, but don't be afraid to learn it, because when that door opens, then another door opens and another door opens right. Can also get a good support system. Build a good support system with school, your community, if you can

Rena: 8:30

friends, family and your partner, the person that you're with, because there's going to be days where once had more than they can take, and the other one has to pick that up, right? And then there's going to be days where you're both just let your ripped in with it, but you both have to be able to bounce back and say, okay, look, I've got this, you know. So that support system is definitely a big help, and not only for that child, but for you as well, because you can go and vent and create your own safe space.

Michael Leopold: 9:10

Our next highlight has an exciting update. I spoke with a young adult, Slayton Cooper, when he was a senior in high school, and he talked about advocating unapologetically for your needs. Since that episode has aired, Slayton has gone on to be accepted at Harvard, and he's now a first year student there. So I want to give you a clip from that episode, and the episode is titled, advocating for neurodiversity.

Slayton Cooper: 9:37

The difficulty that I've encountered is not everyone's the same when it comes to acknowledging and embracing their neuro diversity. So this means I can't tell everyone, oh, just embrace your neuro diversity. Say that you Oh, say that you have autism, say that you have ADD say blah, blah, blah, and x, y and z1, they might not even have a diagnosis, right? Right? It two. They may be a bit apprehensive about it, they may be a bit timid, a bit shy, right? They may still be coming to terms with it themselves. So what I've learned is that you don't have to own your neurodiversity at all. What you have to do is own your needs. That's something that's absolutely necessary, like it's a necessity, because once you own your needs, you're able to put yourself in an environment in which you can succeed, right? You don't have to say, Oh, I have autism, so I need x y and z, or oh, I have ADD, so I need x y and z, just say, I need x y and z. Do that like, completely unapologetically, right? Because neuro diversity is a part of you. It's a part of you that's not going to leave and it's something that's going to stay with you. You need to be able to make decisions in the present that will set your future nerd aversion itself up for success, and you do that by unapologetically advocating for your own needs. For me, this is, oh, I might wear an air pod during an interview. I had to do that when I got my first job, right? I looked at the questions beforehand. It was really, really hot in the room, and that triggers my ticks and makes it really bad. So we ended up doing the interview outside, but like little things like that. Yes, I came out and I said, Yes, I have trust in drums. If you see me doing that, that's why. But that's taken me a long time to get to right? That's a point of self acceptance that honestly takes a lot of work, a lot of perseverance, lot of changes in the way you think. So I didn't have to do that, but it's something that I was okay with, and so I advocated for my needs unapologetically, and I actually got the job, which is kind of cool, awesome.

Michael Leopold: 11:30

The next clip is from my conversation with Dr Angie lunderis Weisenberger, a research scientist at the Yale Child Study Center, one of the top centers of learning when it comes to Tourette and related conditions. Dr Angie had some excellent comments about the feedback loop in the brain that can lead to ticking. And there's implications there for how we treat Ts. This is from our episode titled research based treatment of ticks, OCD and depression. Take a listen

Angie: 12:00

one of the absolutely wonderful things about Tourette's, and it's a it's a blessing and a curse, is that they're really good at creating these loops of behavior. So once a loop is created, it's kind of like a like, and I'm going to date myself, it's kind of like one of those record players, and it kind of jumps and kind of goes back into the loop. And it jumps, yeah, and it goes back into the loop. So if you think about it, there's a sensory gating system in your brain. This sensory gating system, what it does is it pretty much helps you filter out unwanted or unnecessary sensory information. So as I tell the medical students. After a while of sitting down on your chair, you stop thinking about the way that the seat feels on your body, or the way that your pants kind of rub against or the seams rub against your skin, and you stop thinking about the temperature in the room, and this information just becomes kind of like, like fades into the background. That is thanks to our sensory gating system. What happens with a lot of psychiatric disorders, because it's not unique to to to rats, is that some of those sensory pieces keep coming to our conscious awareness. So for example, you had a cold, and you had kind of like a little scratch in your throat, and you can't stop just pushing that sensation into the back of your conscious awareness. It's kind of present, and you feel like you have to clear your throat. Then comes this part about where people that have Tourette's are really good at creating routines, and so you start clearing your throat because you have a stimulus that is creating you to to have that and then you create a loop, a behavioral loop, and then that behavioral loop continues even in the absence of that stimuli. And so the idea is that with with that treatment such as ERT, what you're trying to do is teach the body a different type of behavior that is active to the original behavior, so you're kind of breaking that that loop, because you can't use the same muscles for opposing behaviors at the same time.

Michael Leopold: 14:14

Many in the NJ CTS community know about Dr Jeremy lickman, a clinical psychologist who's spoken on our podcast a couple of times. I got to speak with both him and his dad, Dr Jeff Lichtman, who's also a psychologist. Jeremy's dad, Jeff talks about a way he shaped the environment at home to support Jeremy socially when when Jeremy was growing up and and I think this is a really helpful tip for parents. The two of them also had some insights on handling situations in the family where you have multiple children with different needs, and kind of how you balance that and navigate that. So I'll share both of the clips, one right after the other. This is from the episode navigating Tourette's. A father son journey. Later

Jeremy Lichtman, PsyD: 15:02

on, as things developed, we Jeremy referenced shaping the environment. We very much worked hard to check the environment. On the weekend. We worked hard to make sure that our house, with the house to be for the kid, you know, like this is the house to hang out at. And it was when I made sure we bought the best candy, the most variety of candy. I mean, the dentist loved me. I'm good to jump in and just say that this is something that for kids I work with current syndrome or other diagnoses, whereas social potential, social stigmatization, or actual social stigma teach is going on. This is advice that I continue to give to this day to families that I work with. But sorry, I cut you on satellite, and it is

Unknown: 15:41

good advice. And I would, I think it's one of the best things we did, frankly, in terms of healthy to shake the environment. So in other words, we created an environment where all the kids rang it out here, and it was a safe environment for Jeremy. I was an environment that we could monitor, that I could monitor, and I spent a lot of time. I would hang out with the kids. Look, Jeremy was a boy, and we would play games together and stuff like that. So it helped me to do that myself as a parent, to develop some rapport and relationship with his friends, with his peers, as well as seeing the situation and being able to monitor I got more attention than my siblings, I think especially early on, when my parents were more concerned about my texts, and I think that they did a lot to really again, as my dad said, shape this environment for myself, for me. When I talk to parents about this, I talked about a few things. One I talked about like, yes, it is not necessarily fair that you're talking with ticks. Might need more attention from you and might get more support from you at times. Now it's it is critical that, as a parent, you do give your time and attention to your other kids as well. You cannot ignore that is, they are still your children, but you might need to give more attention to your child with whatever the special needs might be, even if it's threats in your ADHD, autism, Down syndrome, anxiety, depression, right? It's also not fair that child is the one you have, whatever the diagnosis is, whatever the challenges are, right? And so I think when I talk about with families is I talk about one, it is going to be unfair, and that's okay, different kids have different needs, right? And parenting is about parenting to the best of your ability each individual child's needs, right? And even if it means an unequal amount of time and energy put into each child, right? I think the other thing, though, and I talk about with parents, is you have to also be able to talk about that with your other kids. I don't think again. I talked a lot earlier about how, like having my Tourettes was just a thing that we did talk about. So I don't know exactly what my parents did with my siblings here, but I do think me having that language was so important. I think it's important that the whole family has that language, right and that and I believe very strongly being honest with children too. So if it's like, you're going to a doctor appointment for your child with Tourette's or whatever you and it means you might miss something with another kid, I think say, hey, yeah, this is an appointment that I'm going because your brother, Jeremy has Tourette syndrome, and it's all during connecting. During connect, and I do have to do this, and I know that sucks, validate how it might suck that and I will be missing your play. And what are we that we can also, what are ways that I can still have that time with you, for you, and I think that's a really important balance. But I think the idea of, like, every kid should get exactly the same. No kid is exactly the same. So of course, they shouldn't get exactly the same and just like, it's unfair that my parents maybe have to spend more time and energy on me. It wasn't fair that I had Tourette syndrome. I think it's that's the kind of way that I talked to I talked about it with parents. I'll turn it over to my dad now and see how accurate was I on in terms of what you were gonna say, look, I think you're I think you're very accurate. And I would just add that I think it's true about balance for life in general. I live by the motto that in life, anything is possible, anything is possible, but not everything, anything but not everything. And therefore, so I think it's important to give no matter what, to give time to all of your children. But it doesn't mean that you're going to give them the same time, equal time,

Michael Leopold: 19:04

given the association between Tourette and sleep, I had a conversation with Ben Mooney, a CBIT trained occupational therapist in Colorado, who also happens to have Tourette, and he specializes in insomnia. I figured speaking with him, could be an interesting episode, given the prevalence of sleep difficulties in our community. The episode is called, do you tick in your sleep?

Ben Mooney: 19:30

And here are some of the highlights. Of course, I'm a little biased here, but sleep is, in my opinion, the most important thing do. The way that we record memory is through sleep. So we have a hippocampus, which is sort of like a thumb drive, and all the details that we record during the day, like what car is next to you at the red light, how the food is arranged on your plate, everywhere you go, your brain is just constantly recording all. These details, and by the end of the day, you have millions and millions of bits of information just from that day alone in your brain and your hippocampus is that thumb drive that's just storing all this data. And somehow that data needs to be filtered out. A lot of it's unnecessary to us, but there's so much data that is important to us as humans, and it needs to get filtered into long term storage. And so one of the key things that happens in slow wave sleep is that data is transferred into the cortex, into long term storage banks, and it's based on what we need. So that gets filtered in sleep. That's one of the key things right there. Our body goes through so much growth in sleep. I think 75% of human growth hormone is released in sleep. Our muscles are relaxed and repaired in sleep. Sleep is again, like I said, Where memory storage takes place. We absolutely need sleep to sort of reset our nervous system, let our organs relax. There's toxins that are flushed out of our brains. Like our brains actually shrink when we're in sleep, and the CSF, the cerebral spinal fluid, washes over the brains, and it clears out toxins. It clears out the amyloid plaques. That's where we have that association with dementia, Alzheimer's. This is one of the key processes in sleep. And then, of course, there's this amazing, beautiful REM sleep that we have, and that's phenomenal, because in REM sleep, what's going on is it's basically our brain creating test scenarios for life. So we have this huge autobiographical history of information. Somehow, we need to test this out to create our version of reality and to be prepared for what's happening in the future. So our brain basically has all of this data and it creates stories. These are our dreams. Our brains 30% more active in REM sleep than when we're actually awake fully. And it's just creating these sequences of potential events and how we would handle that information. When you think about like emotional regulation or being able to find balance with your mood, when we hash this out in our dreams, we're so much more relaxed and prepared and able to essentially handle stressors in our day to day life. When I work with my clients that have insomnia, I tell them, no matter what, I want you to wake up at the exact same time every day. Let's figure out what that time is that's opportune for your life. Let's figure out this time that works best for all of the different circumstances you have. And yes, I understand if you're a teenager, you may need to binge on a little sleep and sleep in a little bit. What can we do to find a wake up time that's as close to what you can do regularly and consistently, so that way all of those other chemicals in your body can keep reacting in a predictable manner and essentially create this wave that pushes your body into sleep consistently each night.

Michael Leopold: 23:19

Next up, we have the brilliant doctors Jay and Max tischfield, father and son, both are Tourette researchers at Rutgers University. In the episode, ongoing genetic research with touretic mice, they talk to me about a habit model for understanding Tourette Syndrome, basically framing our tics through the model of habit and habit formation, and I think it's a fascinating hypothesis that they are researching and other researchers are looking into now, and it may explain how ticks work. Now, this clip is a bit longer than some of the others, but it's well worth a listen. Here it is,

Dr. Jay Tischfield: 23:57

something I might post to you. Michael, when you have a tick yourself. Do you ever find yourself ticking in a particular time or a particular location or a particular context? Absolutely? Yeah, yeah, definitely. Patterns. And when you think about a pattern, something you do often, what would you call that a habit? That's right. There are studies in humans that suggest that those with Tourette's may be more habitual, meaning that they may rely more on habits than other types of strategies, and the idea that ticks might actually be a maladaptive habit in response to urges and unpleasant sensory stimuli, such that in the beginning when you learn a tick, I think you could probably sit here and say, Yeah, I remember when I learned that tick, or I was around this person and I picked up that tick, you learned it now, the same mechanisms as our brains learn used to learn things, dopamine, for example, these are pathways and neuromodulators that are involved with not only how we learn to do something for a goal, to achieve something, but after a while, if you repeat that enough, it becomes a habit and. Are elicited unconsciously. They're elicited by sensory cues in your environment. They're elicited by emotions, feelings, something that you associate with, something that you've done in the past that has led to a reward. So if you learn a tick in the beginning and you feel an urge and you tick and you get that relief, if you repeat that enough, that becomes habitual. And what we have discovered, and this is actually very exciting, this is where our unpublished research is going, is that our mice are more habitual, like a study in humans published seven years ago, suggested that patients may rely more habitual strategies. We have been testing mice. It's a 40 day procedure. You have to sit down with these mice sometimes for 10 to 14 hours a day, but 40 days straight, there's no Saturday off, Sunday off, even going grocery shopping for my students, is tough during these assays. Wow. We teach mice to form habits, and then we teach them to suppress their habits. Ticks are hard to suppress. You can do it right. It's tough. And what we have learned, and this is kind of interesting, I think this is what Jay went on to say, that sometimes Tourette's can be there are qualities of Tourette's that can be gift like you have super, I want to say super human qualities. But what we find is that these mice develop habits much quicker. They have difficulty suppressing them or breaking them. What's interesting in the beginning stages of a habit? What do we see? What we notice is that these mice are super motivated. They work really hard. If you put a mouse, if you put a Tourette mouse, quote, unquote, Tourette mouse next to its unaffected sibling, and you give that massive reward, but let's say that the there's an uncertainty to the delivery of that reward. The mouse knows that if I poke my nose in this hole, I will get that reward, but I don't know when it's going to happen, so I just got to poke. What we find is that the Tourette mice quickly, very quickly, learn they elevate their nose poking so high the rate that they're not going to miss that chance to get out. That rate they want to their reward perception, the idea of what that treat is to that it may have a higher incentive value, such that they're more motivated to go for it. And they repeat that action over and over again, and you see that very quickly. So they show elevated motivation. They show higher degrees of motor responding. Now, when you tabulate who wins the most rewards, the Tourette mice always win the most rewards. They always call the normal mice. They have that intrinsic motivation. But what if they stop those goals? There's a trade off for everything in life. That trade off, that Tim Howard might say, gives them the extra motivation, or that determination. A lot of this is fueled by that neuromodulator, dopamine. Dopamine is very big. It powers our motivation. It determines our ability to perceive a reward. It also invigorates our motor system. You might have more dopamine. It might make you more motivated. It might make you more likely to repeat things, for example, or just to consolidate, as we say, motor movements. What it also might do is potentiate systems in our brain that learn to associate a sensory cue with an action, such that when we put our mouse back in our chambers, they have these specific chambers, and when they go inside, they see the nose port, they see the chamber. These are the sensory cues that the mouse has learned to associate I'm in this assay. I'm supposed to nose poke, as we say in our lab, Star poking. These sensory motor transformations are potentiated in these mice, so the same dopamine, you know, it's working to help the motivation, it's working on the reward system. It's probably all we also working on strengthening stimulus response associations that ultimately elicit an almost a motor behavior such that that's exciting, yeah, you learn quicker. But these were ideas that were postulated from a single human study, and I should add that those that were on dopamine blocking medications did not show this habit phenotype in humans. What did There you go? Yeah. So what have we learned? Our mice are actually mimicking this theory of Tourette's. And we should add cognitive behavioral intervention, therapy, Habit Reversal therapy, that's the

Michael Leopold: 29:21

main gold standard treatment now for ticks and therapeutic right?

Dr. Jay Tischfield: 29:25

And through these mice, we're starting to learn there's a reason for that, and that's because the habit activating centers most of your brain that control habit, like behaviors are affected. In Tourette's. Through the mice, we're now starting to say, what are those particular neurons and you can actually do and this is exciting. The student in my lab, the grad student who has Tourette's, who who works on these mice, and in fact, has developed nose poking ticks by watching the mice behave, we

Dr. Max Tischfield: 29:52

have the first species to species, example of tick contagion. Wow, that's a document that. Wow.

Dr. Jay Tischfield: 30:00

Yeah, no. She said she went from the head twitches to no smoking, Wow, and so and again. That just really shows you that these traits can be learned. But what she's doing now with her student, who also has Tourette's, we have multiple individuals in the lab who not only work on these mice, but they've lived with it their whole life. What they can do now is they can use these new technologies, we can put in sensors that allow us to detect dopamine live. And we can put a fiber optic cable into the brains of these mice. And while they behave, we can actually image moment by actually, I should say, millisecond by millisecond, the dopamine changes in the brain. And we can start ascribing these changes to the particular behaviors while they're forming a habit.

Michael Leopold: 30:47

The next highlight comes from the holistic approaches to comprehensive care with clinical psychologists. Episode, I spoke with doctors, Laurie Rockmore and Daniela Colin Nori, two clinical psychologists with extensive experience treating individuals with Ts and related conditions. They both have a rich history of working at the Rutgers TS clinic as well. We had a really upbeat, powerful conversation, and I want to share some highlights from that.

Dr. Daniela Colognori: 31:16

I often tell parents, this wasn't exactly the question, but, but I often tell parents that, like, what I see over the years is sort of like a kid and a family's attitudes towards their tics is more important to the overall prognosis of how a kid is going to do in the long run compared to the actual intensity or severity of their tics. Meaning, like, I sometimes see kids with really out there, visible, intense, severe ticks, where it just, like, bashes me, right? And like, it doesn't stop them. It doesn't deter them. The parents are really able to get behind that and not worry so much. And like, they come out of it the other side, just themselves with ticks, versus some other kids, where it's like, and families where maybe their tics are not really actually that visible or severe or intense, but they've just, for whatever reason, had such a hard time accepting it and being able to put it into perspective, and the attention on it and the distress about it can really, like stop them from doing the things that they're really wanting to do because of how they feel about tics. And so I remind parents that a lot is in their control in terms of how the family integrates and accepts and finds a way to put it in a place. I think they can do whatever they want to do. A lot of kids coming into me and they just are afraid that this is going to stop them and their dreams and their ambitions. And I will tell you, from all of my experience that I have seen kids and individuals with tics do the most amazing things, going to Ivy League schools, playing, like I said, division one sport, going to law school, becoming doctors, becoming researchers, neuroscientists. I've actually seen one of those, and that person will probably know who they are. I just seen people do such amazing things, and there's no stopping you, really, that's funny. One tangible example is like, I can't tell you how many kids and parents come and be like, I'm never gonna be able to drive, oh, my car. And I'm just like, Yeah, you are. Where did I drive a car? Right? Like, and I can't, like, how many secret sessions I've had from them in the car. Like, I'm in zoom, they're in the car. And I'm like, Okay, show me how this tick looks in your car. You know, we're gonna find nobody around there. Like you can drive. Most of my patients with ticks, actually, when they drive, they tell me that they don't, yes, yes, that they're not a single one. They don't believe that. And so you have to get to that point and then be exposed. Yeah, I still have a couple. I'm like, but look, you can just wait till the red light, or you can push against this part of the car. That's a really tangible example. I feel like, of like, What do you mean? Of course, you can.

Michael Leopold: 33:46

Our final highlight comes from Dr Robert Zambrano, a clinical psychologist and cognitive behavioral therapist specializing in Tourette Syndrome, obsessive compulsive disorder and anxiety disorders. The episode is titled managing OCD and anxiety expert insights. A

Robert Zamora: 34:05

lot of psychiatric disorders are sort of invisible, right? We don't always know that someone is struggling with depression or anxiety, right? Their OCD isn't always terribly visible, but I think Tourette's is often on public display. And so what's the best response? I don't know that there's a solid answer for that of them. Let's figure out what the best response is for you, right? And so sometimes it really is. Some folks are super good at just radical acceptance. I get that they think it looks weird. I don't think I'm doing anything wrong. Yes, I might feel uncomfortable or embarrassed, but that's not my problem. That's theirs, and they'll be okay. Some of these folks that I work with. I mean, a lot of members of the tourist community are, like the most sensitive, in a good way, right? Compassionate, empathic people who it's it's kind of almost amazing, like their thought is, I don't want to make other people uncomfortable, and it's so sweet. It's so lovely to sort of think that way. But we can say, maybe we'll just sort of. Except that it's not your fault if they do experience a moment of discomfort and that whatever it is that they're experiencing, like all emotions are temporary, so we don't have to concern ourselves too much. But again, if we want to preempt, be preemptive, we can explain, right? I work with parents who do things like, when their kids get on an airplane, they might take a moment to talk to the folks sitting near around them, or even, like, give them a little, you know, a little card, or something that explains, hey, my my child has Tourette's he or she may be making some sounds or having some motions that might be distracting. Please understand that it's not their fault, and do your best to ignore them. Or if need be, even let me know, and we can figure out how we can work this out together, right? I've had lots of parents do those things, ideally with the child being on board with that, and it gives them a permission structure to simply just be present in a place and understand that if I do tick, hopefully most people around us will be understanding and kind and just ignore it. Or if you know, maybe they're trying the best, their best their best, to ignore it, but they're getting annoyed or frustrated. That's okay, too. This flight isn't forever. Eventually we'll get we'll all get off the plane, and they'll move on with their lives, and it's most likely not going to be the thing that ruined their vacation or even ruined their day, even if it was for some short period of time I had to endure some mild frustration or irritation. So I think that's one of the big unique challenges of working with folks with Tourette's. The other one I think that is really common, is that fear of like, will I or my child be able to have normal relationships? Will they be able to be treated fairly when they're looking for a job, right or interviewing for a position? That's a really legitimate concern, which is why, again, I think as early on as possible, teaching folks with stress to be comfortable, sort of explaining what it is even, and I know people often think it's corny, but to talk about how, you know what, living with stuff like this can be very character building, right? Can build greater empathy, can prove great resilience, some of like, the most cool and amazing people I've met. And before we kind of went on microphone, we're talking about the Tim Howard academy that the New Jersey Center for Dre syndrome does, and like some of the best humans I've met have been at that conference, right? These are like kids who were so much more courageous than I was at their age, right? Who were just natural leaders. And I know it sounds like I'm trying to look for a false silver lining, but I genuinely believe that sometimes having Tourette's like almost forces you to be more public than you originally would have been. It kind of might bring out some of those leadership qualities, or it might force you to sort of be more out and open. And I think the kids who manage it really well, they're the ones who are just battle tested, and they can handle anything. And so to being able to show to share that story proudly with potential employers as part of your college essay, I don't think it's using your disability or disorder. I think it's it's speaking your truth.

Michael Leopold: 37:54

And that concludes the highlights for our 2024 uptick season. To all our listeners, thank you so much for your continued engagement and support. It's been a fantastic year, and I look forward to another year of learning, growth and advocacy with all of you. Be Well, stay healthy and tick freely until Next time you